For quite awhile now Michael and I have switched up sleeping arrangements so that I could sleep with her in hopes that would make a difference. Our thought was that between a new baby and a restless Katie me sleeping with the girls would not only help them but allow me to get more uninterrupted sleep. That is not the case at all. Sleepless nights have become a regular thing in our household and I truly believe that it is tied in with her disease somehow. One of the symptoms is joint pains and I am wondering if that is what she feels at night but can not express to us what hurts or what wakes her so she just cries. Even with all the sleepless nights and the restless naps her smile never fades and that makes the tired feeling in me not matter at all.
There are so many unknown factors involved in Castlemans Disease. No one knows exactly what are symptoms and what are not when it comes to the version Katie has. Is she hurting? Is she achy? Tired? Its hard to determine those answers with Katie because she doesn't know the difference. The only thing that we can do is raise awareness, put the word out there, and help other people who are going through this. My goal with this blog is to spread the word on what continues to happen with Katie and her fight so that down the road if another 2 year old is diagnosed with this disease maybe our experience can shed some light on what they are experiencing.
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